Opportunity Information: Apply for RFA DD 11 004
Apply for RFA DD 11 004
- The Centers for Disease Control and Prevention in the health sector is offering a public funding opportunity titled "Pilot for State specific Cross Sectional Surveillance of Persons with Rare Disorders and Longitudinal Assessment of Outcomes" and is now available to receive applicants.
- Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.283 Centers for Disease Control and PreventionInvestigations and Technical Assistance.
- This funding opportunity was created on Dec 13, 2010 and posted on Dec 13, 2010.
- Applicants must submit their applications by Mar 15, 2011 and made available to CDC for processing from eRA Commons on or before the deadline date. Applications must be submitted to and validated successfully by Grants.gov/eRA Commons no later than 500 PM Eastern Time. Note HHS/CDC grant submission procedures do not provide a period of time beyond the application due date to correct any error or warning notices of noncompliance with application instructions that are identified by Grants.gov or eRA systems (i.e., error correction window).. (Agency may still review applications by suitable applicants for the remaining/unused allocated funding in 2026.)
- The number of recipients for this funding is limited to 2 candidate(s).
- Eligible applicants include: Unrestricted (i.e., open to any type of entity above), subject to any clarification in text field entitled Additional Information on Eligibility.
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Opportunity Summary:
The Centers for Disease Control and Prevention (CDC) grant opportunity titled "Pilot for State specific Cross Sectional Surveillance of Persons with Rare Disorders and Longitudinal Assessment of Outcomes" (Funding Opportunity Number RFA-DD-11-004) is a discretionary funding announcement using a U01 cooperative agreement mechanism. In practical terms, that means CDC expected to fund a small number of projects (two anticipated awards) where the agency would likely have substantial involvement and collaboration with the recipients, rather than simply issuing funds with minimal federal participation. The program sits within the health funding activity category and is listed under CFDA 93.283 (CDC Investigations and Technical Assistance). No cost sharing or matching funds were required, and eligibility was broadly unrestricted, meaning a wide range of entities could apply as long as they met any conditions stated in the full announcement.
The central purpose of the FOA was to improve understanding of what shapes the well-being of young people with rare disorders during a critical transition period from adolescence into early adulthood. The target population was young adults ages 15 to 24, and the work was organized around three life domains that strongly influence long-term quality of life: health, education or work, and social participation. Rather than focusing only on medical outcomes, the opportunity explicitly emphasized functioning and participation in day-to-day life, including how young adults are doing in school or employment settings and how connected and engaged they are socially.
The FOA had two linked objectives. Objective 1 focused on building or strengthening state-specific cross-sectional surveillance efforts. Cross-sectional surveillance is meant to provide a snapshot of outcomes and service use in a defined population at a given point in time. In this context, the CDC was looking for projects that could document how young adults with selected rare disorders were faring across the three domains, and what services they were using (for example, healthcare services, educational supports, vocational services, or community-based resources). The emphasis on state-specific surveillance suggests CDC wanted approaches that could work at the state level, producing actionable information that states could use to plan programs, allocate resources, and identify gaps in services.
Objective 2 expanded beyond a snapshot to include retrospective, longitudinal observation. Here, the aim was to look back over time to understand pathways and potential causes of suboptimal outcomes among some young adults with rare disorders. By examining histories and patterns across earlier life stages, projects could identify factors associated with better or worse trajectories, such as differences in access to services, transitions from pediatric to adult healthcare, educational accommodations, or barriers to employment and community participation. The ultimate intent was not just to describe problems, but to generate evidence that could guide changes in systems, policies, or interventions so that future cohorts of young adults might experience improved well-being and more successful transitions into adulthood.
For the purposes of this pilot, CDC identified three conditions as prototype rare disorders: spina bifida, muscular dystrophy, and fragile X syndrome. Using these as prototypes allowed applicants to build surveillance and outcome-assessment methods around well-defined populations, while also producing lessons that could potentially be adapted to other rare disorders. The focus on prototypes also implies an interest in developing approaches that are feasible and informative despite challenges common in rare disorder research, such as smaller populations, variability in severity, and fragmented care and service systems.
Administratively, the opportunity was posted on December 13, 2010, with an application deadline of March 15, 2011, by 5:00 PM Eastern Time. Applications needed to be submitted through Grants.gov and validated in eRA Commons by the deadline, with an explicit warning that CDC/HHS procedures did not provide an additional error-correction window after the due date. The announcement was archived April 14, 2011. While the award ceiling and floor are listed as 0 in the summary data provided, that typically reflects missing or non-specified amounts in the abstracted listing rather than indicating no funding; the full FOA would normally specify the budget guidance and expected project periods.
Overall, this grant opportunity was designed as a pilot effort to help states and researchers systematically measure real-world outcomes and service use among young adults with selected rare disorders, then use retrospective longitudinal analysis to better understand why some individuals experience poorer outcomes. The broader public health goal was to produce state-relevant surveillance information and evidence about influential factors that could support targeted improvements in care, supports, and participation opportunities for young people with rare disorders.
Frequently Asked Questions (FAQs)
What is the title and funding opportunity number for this CDC grant?
The opportunity is titled "Pilot for State specific Cross Sectional Surveillance of Persons with Rare Disorders and Longitudinal Assessment of Outcomes" and the Funding Opportunity Number is RFA-DD-11-004.
What type of grant mechanism is used for this opportunity?
This funding announcement uses a U01 cooperative agreement mechanism. That typically indicates substantial CDC involvement and collaboration with awardees, rather than a more hands-off grant structure.
Is this a discretionary funding opportunity?
Yes. The opportunity is described as a discretionary funding announcement.
How many awards did CDC expect to make?
CDC anticipated making two awards under this opportunity.
What is the CFDA number and program listing for this opportunity?
The opportunity is listed under CFDA 93.283, "CDC Investigations and Technical Assistance."
What funding activity category does this opportunity fall under?
It is categorized under the health funding activity category.
Was cost sharing or matching required?
No. The opportunity stated that no cost sharing or matching funds were required.
Who was eligible to apply?
Eligibility was described as broadly unrestricted, meaning a wide range of entities could apply, as long as they met any conditions stated in the full announcement.
What is the central purpose of this pilot program?
The purpose was to improve understanding of what shapes the well-being of young people with rare disorders during the transition from adolescence into early adulthood, with attention to outcomes, functioning, participation, and service use.
What age group is the target population?
The target population is young adults ages 15 to 24.
What life domains does the program focus on?
The work is organized around three domains that influence long-term quality of life: (1) health, (2) education or work, and (3) social participation.
Does the opportunity focus only on medical outcomes?
No. It explicitly emphasized functioning and day-to-day participation, including how young adults are doing in school or employment and how socially connected and engaged they are, in addition to health.
What are the two main objectives of the FOA?
The FOA includes two linked objectives: Objective 1 is state-specific cross-sectional surveillance; Objective 2 is retrospective longitudinal observation to understand pathways and factors associated with outcomes over time.
What does Objective 1 (cross-sectional surveillance) aim to do?
Objective 1 is intended to build or strengthen state-specific cross-sectional surveillance to provide a snapshot of outcomes and service use among young adults with selected rare disorders across the three domains (health, education/work, and social participation).
What types of services and supports were projects expected to document under Objective 1?
Projects were expected to document service use such as healthcare services, educational supports, vocational services, and community-based resources, along with outcomes across the three domains.
Why is the surveillance described as "state-specific"?
The emphasis suggests CDC wanted approaches that work at the state level and produce actionable information states can use for planning programs, allocating resources, and identifying service gaps.
What does Objective 2 (retrospective longitudinal observation) aim to do?
Objective 2 goes beyond a snapshot by looking back over time to understand pathways and potential causes of suboptimal outcomes, examining histories and patterns across earlier life stages.
What kinds of factors might be examined under the retrospective longitudinal component?
The FOA described examples such as differences in access to services, transitions from pediatric to adult healthcare, educational accommodations, barriers to employment, and barriers to community participation.
What is the broader public health intent of the longitudinal analysis?
The intent is to generate evidence that can guide changes in systems, policies, or interventions so future cohorts may experience improved well-being and more successful transitions into adulthood.
Which rare disorders were identified as prototype conditions for this pilot?
CDC identified three prototype conditions: spina bifida, muscular dystrophy, and fragile X syndrome.
Why did CDC use prototype rare disorders?
Using prototypes allows applicants to develop and test surveillance and outcome-assessment methods in well-defined populations, while producing lessons that could potentially be adapted to other rare disorders.
What rare disorder research challenges does the FOA imply this pilot approach is meant to address?
The description highlights challenges common in rare disorder research, including smaller populations, variability in severity, and fragmented care and service systems.
When was the opportunity posted?
The opportunity was posted on December 13, 2010.
What was the application deadline and time zone?
The application deadline was March 15, 2011, by 5:00 PM Eastern Time.
How were applications required to be submitted?
Applications were required to be submitted through Grants.gov and validated in eRA Commons by the deadline.
Was there an error-correction window after the deadline?
No. The FOA explicitly warned that CDC/HHS procedures did not provide an additional error-correction window after the due date, reinforcing that submission and validation needed to be completed by the deadline.
When was the announcement archived?
The announcement was archived on April 14, 2011.
Does the summary data provide an award ceiling and floor?
The summary information listed an award ceiling and floor as 0, which is typically a sign that amounts were missing or not specified in the abstracted listing rather than indicating no funding. The full FOA would normally include budget guidance and expected project periods.
What was the overall goal of this pilot effort?
The overall goal was to help states and researchers systematically measure real-world outcomes and service use among young adults with selected rare disorders, then use retrospective longitudinal analysis to better understand why some individuals experience poorer outcomes, producing state-relevant information to support targeted improvements.
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| National Spina Bifida Registry Longitudinal Data Collection and Evaluation (U01) Apply for RFA DD 11 005 Funding Number: RFA DD 11 005 Agency: Centers for Disease Control and Prevention Category: Health Funding Amount: $50,000 |
| NIAID Science Education Awards (R25) Apply for PAR 11 086 Funding Number: PAR 11 086 Agency: National Institutes of Health Category: Health Funding Amount: Case Dependent |
| Georgia Tuberculosis Prevention Project Apply for RFA 114 11 000001 Funding Number: RFA 114 11 000001 Agency: Georgia USAID Tbilisi Category: Health Funding Amount: $4,450,000 |
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